The impact of the COVID-19 pandemic on the standards of care of patients with lysosomal storage diseases and the needs of their healthcare providers were explored using a 12-question survey. Overall, 80/91 respondents (88%) indicated that the pandemic had negatively affected standards of care. With increased reliance on telemedicine, the respondents highlighted the need for a personalized approach to care, direct and frequent communication with patients, and greater involvement of patients and caregivers.

中文翻译：

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COVID-19 大流行对溶酶体贮积病患者护理标准的影响：对 Fabry、Gaucher 和 Hunter 结果调查登记处的医疗保健专业人员的调查

使用 12 个问题的调查探讨了 COVID-19 大流行对溶酶体贮积病患者护理标准及其医疗保健提供者需求的影响。总体而言，80/91 的受访者 (88%) 表示大流行对护理标准产生了负面影响。随着对远程医疗的依赖增加，受访者强调需要个性化的护理方法、与患者直接和频繁的沟通以及患者和护理人员的更多参与。